Life with Phoebe Heaven-Side

Last Day of Chemo Round 3

Phoebe had a good day with her Daddy and her Grammy is staying tonight. She received her last chemotherapy infusion today and is tired, but happy. We are all wary of her sleepiness of course, since that was the first indicator last time that something was going awry, but she is still very awake and interactive when she wakes up and that is a good sign.

Phoebe with Grammy and Grandad.

She is now receiving a special breathing treatment that forces air into her lungs in an effort to expand her lungs more. She has it twice a day and it isn’t her favorite. She is also sleeping tonight with a bi-pap machine in hopes that the extra help with breathing will help her rest enough to be stronger. No one is quite sure why her muscles are so weak, and one of the theories is that she is worn out from the very effort of breathing and trying to adequately oxygenate her body. We’ll see.

The difficult part of the chemo cycle is coming up and we appreciate all of your prayers. I praise God tonight that her sodium levels have been so beautiful in spite of all the extra fluids these past few days with her chemotherapy. Those perfect levels are a good indicator that she will get to come home with us at the beginning of next week if she is otherwise doing well!

I hope you all have a wonderful Good Friday and resurrection weekend,

~Amey

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About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th.
A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle".
We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms.
We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated.
Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope.
Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

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so glad to hear that things are not quite as rough as the last treatment. Will keep praying for positive results and continued improvements. May God’s glory shine through the process of going through all this with healing and the showing and living of your faith in Him. Your children are blessed to have God following faithful parents such as you. It is hard to see your child hurt and in pain but know that as this Easter season surrounds us that God our Father watched His son hurt and in pain and what wonderful blessings we have because of it.

Praying for you guys. After Bob’s mom had cancer surgery, she experienced the just-too-tired-to-move thing. It was scary. It ended up being a medication she was on that she didn’t need. Blood pressure regulator. Phoebe Girl’s situation may work itself out just like that. But we’re praying for your doctors just like we’re praying for you!

Christ is Risen. Indeed. And that makes all the difference, doesn’t it.